Colorado Families for Hands & Voices

Colorado Families for Hands and Voices is dedicated to supporting families with children who are Deaf or Hard of Hearing without a bias around communication modes or methodology.

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You are here: Home / Archives for Uncategorized

Transition (ages 16 – 21)

April 22, 2022 by Brenda Elliott

From the moment you became aware your child had a hearing difference, you’ve spent years scheduling appointments, attending therapy sessions, supporting your student, advocating for supports and services at school, teaching them to advocate for themselves, and now, you are ready to guide them as they explore post-secondary education opportunities, technical schools, incentives for employers, scholarships, and tools for exploring career.

For more information, email astra @ co-hv.org.

Colorado: Secondary Transition | CDE (state.co.us)​

Accommodation and service example from Colorado College: Request for Accommodations and Services – DSV4-LionHead (accessiblelearning.com)

Common accommodations for colleges and technical schools:​

ADA Effective Communication information

Click here to view the list on the new ADA.gov website in another tab.

National Deaf Center (NDC):

Belief and High Expectations, Key to Success: https://www.nationaldeafcenter.org/sites/default/files/asset/document/Key2-Expectations.pdf​

Transition: https://www.nationaldeafcenter.org/topics/transition

Check out these tools to explore career possibilities that pique your interest and leverage your strengths!

50 Videos for Career Path Explorations | KQED

​Video Library | Videos | CareerOneStop​

O*NET OnLine (onetonline.org)​

Working in Colorado:

Employment First Fact (EFF) Sheet: EFAP Documents and Reports | Division of Vocational Rehabilitation (colorado.gov) 

This page is under construction

Filed Under: Uncategorized Tagged With: accessibility, accommodations, ada, careers, college, employer incentives, expectations, scholarships, trade school, transition

Hidden Dangers – CMV

June 28, 2020 by Jami Fries

Hidden Dangers
When Erin and Jeff Swetnam got the news that they were pregnant with their second child, they were overjoyed. Their son Michael was going to be a big brother! Erin did everything right during her pregnancy. She exercised, ate all the healthy foods, and didn’t drink alcohol. But there was another danger in her home that she didn’t know about; one that her doctor didn’t talk about. CMV (Cytomegalovirus) is the number one virus transmitted from mother to unborn child and the number one cause of non-genetic sensorineural hearing loss (SNHL) in children. It’s a danger that infects over 30,000 children every year.
According to the National CMV Foundation, “the virus is often symptom-free or may seem like a cold or flu. It is typically harmless in otherwise healthy children and adults. CMV is very common among healthy children one to five years of age (one in three five-year-olds are already infected), especially for those in daycare and preschool.” Expecting moms with older children are at high risk for catching CMV and passing it along to an unborn baby. Moms are often never told that using simple healthcare precautions could drastically reduce her chances of catching CMV while pregnant. These are as simple as avoiding sharing food or drinks with her toddler, not putting a pacifier in her mouth, not kissing away her son’s tears, and washing her hands after wiping his nose when he was sick.
“At 20 weeks we knew something was wrong with the baby. My OB still never mentioned CMV. We were sent to a high-risk doctor to do an in-depth ultrasound and amniocentesis. We found out that Matthew had calcifications on his brain and a small hole in his heart. We left without a reason why. We made a plan to induce at 35 weeks if we made it that far, but the doctors had told me to be prepared that he probably wouldn’t survive. At 30 weeks, we were told that Matthew had congenital CMV via a test result from amniocentesis. It was the first time I had ever heard of this virus. I wish I would have been told about my risks at my first prenatal appointment. It would have been nice to know precautions that could have been taken. The first time anyone explained anything about it to me was after I received the diagnosis,” says Swetnam.
Carrying a child with CMV is very stressful. There are no guarantees what kind of life a child may have until he/she is born. It’s a lonely and hard journey. At 32 weeks, Erin started early labor, and her family rushed her to the hospital. Later that day she had Matthew via emergency C-section. Weighing just 2 pounds, 7 ounces, he was diagnosed with an enlarged liver and spleen, low platelet counts, a blueberry muffin rash called petechial, and a bilateral hearing loss. He would go on to have multiple blood and platelet transfusions and start his 6-month antiviral medication series during his 46-day NICU stay.
The Swetnam Family

As Matthew grew, Erin and Jeff knew he would need some extra help to meet his milestones. As he was learning to walk, he needed support from a walker to stay balanced while on the move. Matthew received his first Cochlear Implant when he was one and a half, and then another when he was almost four. When Matthew was 3, he was also diagnosed with severe Autism. His mom notes, “There are so many things we have to take into consideration for Matthew. Speech Therapy is a challenge because he needs so much sensory input during therapy. Trying to keep him on track with his autism is challenging. Every week we have PT, OT, and Speech, along with two therapies to help with his autistic behaviors. We did Sign Language and Auditory Verbal Therapy for a while as well. What he needs on a day-to-day basis always changes. He is also just a little boy trying to keep up with his big brother.”

Matthew’s day-to-day routines also have to incorporate his older brother, Michael. “We are very fortunate to have such a helpful son. He is always asking what he can do to help. He puts his brother’s implants back on if they fall off and he is so patient. Having a special needs brother has made him more sensitive and aware of others’ needs. But I also see the acting out. It’s hard to not be able to do all the ‘typical’ things that ‘typical families’ get to do. We are lucky to have grandparents on both sides who spend time with Michael. Jeff and I make sure we switch places so we can have one-on-one time with each of the boys,” says Swetnam.
There is plenty of joy, too! “We get these pleasant surprises out of Matthew all the time. Just recently we found out that he was reading at 4 years old. We had little cues from him, and one day I put about 20 words up on our whiteboard in our house. Matthew read every single word!”
These little warriors change our world as parents. “Our CMV kids who have challenges are often behind in meeting their milestones. But what they give us and what we see out of them is amazing. They are so strong and resilient. And they make us better people.”
For more information: National CMV Foundation or the CDC online.
Join the CMV Task Force in Colorado; email here.
Thanks to Jami Fries and Erin Swetnam for collaborating on this article. We look forward to sharing more information as a sub-recipient of the Colorado American Academy of Pediatrics Partnership Grant Award announced in June 2020.

Filed Under: Uncategorized

A Journey of Growth and Understanding

June 8, 2020 by Brenda Elliott

A Journey of Growth and Understanding
By Kelly Fernandez-Kroyer
I live with my husband Sean and our two sons, Ethan and Noah in the north Denver metro area. Both of our children decided to make their entrance into this world early at 32 weeks. After the premature birth of Ethan, we did our due diligence to determine why he had stopped growing in utero and what we needed to do to prevent this from happening in any future pregnancies. Fast forward two years later, we were ecstatic to make Ethan a big brother. This second pregnancy was eventful from the beginning. I had a new diagnosis– a blood clotting disorder–which doctors believe caused Ethan to stop growing. We learned that the best solution to prevent premature birth again was to start blood thinners at 8 weeks gestation. As the pregnancy continued, I was eventually transferred to Maternal-Fetal Medicine because the same symptoms were presenting again. At 29 weeks, I started hospital bedrest to give this son as long as possible in utero. We planned to name this little one Noah. Further interventions were unsuccessful and Noah was delivered at 32 weeks. Being premature, Noah was immediately transferred to the NICU where he would stay for the next 20 days.
When we received word that the NICU was getting ready to release Noah and that all we needed to complete was the carseat test, we were elated. I remember coming in that morning and seeing Noah’s hearing screen certificate saying he had passed. I thought nothing more of it because we knew that there was no history of hearing loss in either of our families.
A Quest For Answers
Because of Noah’s prematurity and at the suggestion of our pediatrician who noticed that Noah wasn’t meeting developmental milestones, we received a referral to Early Intervention. Hearing and vision were part of the battery of tests to be completed. I went with Noah to these evaluations thinking that hearing testing was just a formality because he had passed his hearing screening at birth. He was six-months-old when we got our first “refer” in his right ear during this OAE (otoacoustic emissions) testing. We were told that we should follow back up with them in 6 months to rescreen. We returned in 6 months and again received another refer. Now at a year old, we were informed we should follow up with an ENT to see if we could get further answers on Noah’s hearing. We went to that appointment where the doctor ran another OAE and again, received a refer result. The ENT scheduled us to see the audiologist the following week. His first test in the sound booth with an audiologist was not reliable and was incomplete because our one-year-old boy was not interested. We scheduled more exams, but finally scheduled a sedated ABR (auditory brainstem response) test to get better results. We would learn that Noah’s ABR showed that he had unilateral sensorineural hearing loss at a moderate level across all frequencies.
We thought we had finally received the answers we needed to take the necessary steps to ensure that Noah would be as successful as possible. We were not quite there. Because his previous tests had been so unreliable, his audiologist wanted to complete yet another booth test to ensure all of the results were in agreement with each other. For the next 6 months, Noah’s results seemed to fluctuate. He was responding to sounds that his ABR told us he shouldn’t hear. Being an 18-month-old boy, we also didn’t get cooperation from him at most appointments. Finally, it was decided we should schedule another ABR nine months after his first one had been completed.
We came into this appointment expecting that we would finally get confirmation that his results were similar to that first ABR. After the test had been completed, we were informed that Noah’s results now showed that he did have UHL but that this loss was only in the lower frequencies (500 Hz and 1000 Hz). The ABR showed that his results in the upper frequencies were within the normal range. We were informed that he had reverse-slope hearing loss and further that his hearing loss was not sensorineural but conductive, or related to his middle ear, instead. We were in shock but determined more than ever to do whatever needed to be done to ensure that he could be as successful as possible.
It has been four years since we received that diagnosis and subsequent hearing tests have aligned with his last full evaluation showing UHL. We made the decision to pursue amplification which has proved successful in assisting Noah to reach his full potential. I look back on the emotions that I first felt when we received Noah’s diagnosis. After the shock had worn off, which I admit took longer than I expected, I decided that his hearing loss was not going to affect the person he was going to become. Although we began receiving early intervention services later than we would have liked due to the length of time it took to confirm his results, I am thankful that we were able to provide him with the therapies he needed to assist him in his development. I made it a priority to become as informed as possible on what my son’s identification with UHL meant for him.
I immersed him in as many programs as I could possibly find to make sure that he knew that he wasn’t alone; that there were other children just like him. I have been involved in a UHL focus group and had the opportunity to attend quite a few events and workshops through CO H&V, and am excited that we have both a CO UHL page and a Facebook page through Hands & Voices HQ. I have met many incredible people along the way who have shown me that my son’s hearing loss is not going to prevent him from being the best he can be.
I am thankful that I can share the same hope that I was provided; that being deaf or hard of hearing doesn’t lessen a person’s chance of reaching their fullest potential and that there is a strong support network available for as long as needed. Through this journey, I have learned that success is something that Noah will define for himself. There are no limitations on what he is capable of achieving.

Filed Under: Uncategorized

High School IEPs for the Weary Mom

June 26, 2019 by Jami Fries

High School IEPs for the Weary Mom
By Amy Scriven

“How weird do you want me to be, mom?” My son is the sweetest, most polite teenager, who would never say that to my face, but I could tell from his sadness and frustration that he was thinking it. “Hearing aids? I don’t need them; I’ve been fine this far in life. IEP? No way mom!” Unspoken, heartbreaking words written all over his face and through his future actions of refusing to wear his aids, hiding his mini mic, and feelings of shame and sadness from being what he would call different.

Late Diagnosis. We adopted our precious Cole from China at age 14, and it took a few years to uncover all of his medical needs, including that he is hard of hearing and the subsequent recommendation of hearing aids. As parents we think, “Okay, this is costly, but not bad, there is a solution, we can navigate this.” Our teen was thinking, “Whoa no way, hold it right there, cowboy. Hearing aids in high school? No way!” Our son went through all the stages of grief over his need for hearing aids, and as uneducated parents, we struggled to guide and comfort him.

High School IEPs. I’m at the age where doctors suggest mammograms and colonoscopies, both more desirable than navigating an IEP meeting. Our first denial of an IEP cited that our son did not qualify because his IQ scores were too high, and English is his second language, which was deemed the sole contributor to his struggles. The fact that he was hard of hearing was skimmed over and labeled, “not that significant,” without even showing us the legal criteria for eligibility. I was crushed and cried at the end of the meeting when Cole was denied IEP accommodations. Yes, our son is smart, yes English is his second language, but the poor dude couldn’t understand the teachers well enough to acquire English at the rate that matched his IQ. My biggest mistake, among many, was not seeking out an advocate specifically for deaf/hard of hearing kids.


My list of Coulda, Shoulda, Woulda’s:

  1. Seek help from advocates who specialize in kids who are deaf/hard of hearing. Not only did the Hands and Voices team assist me with understanding the IEP process, my son’s rights, how an IEP could help him, but they also guided me emotionally and educationally through hearing loss in general. As a mom of a late diagnosed kiddo, I didn’t fully understand how to read an audiogram, let alone effectively navigate IDEA laws. The Colorado Hands & Voices team spent hours at my kitchen table, over the phone, and through email helping me learn and prepare. Their coaching helped me to be more confident during the IEP meeting and provided my mama heart with some much-needed love, reassurance, and tender care during what was a confusing time for our family.
  2. Be open to advice. Our son Cole, who is now 18 and much farther along in this journey, does not mind me sharing that he did everything that first year to foil efforts to assist with his ability to communicate and gather information. My response to his actions, which was all part of his grieving process, often made the situations worse. The Hands & Voices team gave both my husband and me, and the IEP team, suggestions to help Cole feel more comfortable speaking up for the accommodations he needs to learn at the rate of his peers. For example, allowing Cole more control over his hearing aid usage, setting up a plan for a period of months where his teachers discreetly prompted Cole for his mini-mic instead of putting the responsibility solely on Cole, and having him meet with a teacher of the deaf/hard of hearing to research and learn about his hearing levels and how to advocate for his needs.
  3. Come to the IEP meeting with a plan. Research IDEA laws as it pertains to students who are deaf/hard of hearing. Create a list of your teenager’s areas of need with specific examples from both home and school. Also, come prepared with a list of possible accommodations you would like to see for your teen once the IEP is approved. Practice how to describe your concerns to the team and your answers to possible objections. Remember, as a parent your opinion matters, and what you see at home is as valid as the perception in the classroom.
  4. Consider speaking with the IEP team without your teenager. Cole is a joy to parent. He’s easy going, quick to laugh, and if we are being totally transparent a real mama’s boy. However, he did not think he needed aids for hearing or an IEP. During the first meeting, not only did the educators cite Cole’s insistence of not needing help, but also Cole had to hear over and over my words of how he was not thriving and not performing as well as he could in school. This sent the wrong message to Cole that he was somehow failing, which he was not, and that he was responsible for this perceived failure. One solution is to conduct part of the meeting without your teen. Take a bit of time to review your concerns with the team, and then have your teen join after for the solutions and accommodations portion, so that he or she can feel empowered rather than deflated.
  5. Plan for transition services. Your IEP team should document transition plans starting at 16, but I found my son still needs much assistance answering the big question, “What’s next after high school?” Stretch outside of the IEP team and attend workshops designed to help you and your child determine areas of interest and the proper track for exploration. The path ahead may include college, Voc Rehab assistance with training and job coaching, or perhaps volunteering for more discovery. You are not alone, there are many organizations that provide transitional information including Hands & Voices.

A year later, armed with copious amounts of research and knowledgeable advocates from Hands and Voices, our kiddo was approved for an IEP that is helping him to understand his teachers and material better, learn to self-advocate, and educate his peers. Most importantly, he’s starting to see himself not as weird, or different, but just as our precious Cole, who truly is a gift from God.

Filed Under: Uncategorized

Transforming Transition

April 26, 2019 by Jami Fries

In a survey of even “experienced” parents, a majority did not have a clear grasp of what should be happening during transition the time a child is 14 to leaving high school ready for further education, college, or career. Teens are not clear either. Teachers of the Deaf/hard of hearing (TODs) often support preschool through high school as an itinerant service and thus are not always well-versed in transition IEPs and knowledge.

Students, parents, and TODs need more information and support to learn how to make the most of transition for effective outcomes for teens.

Most of us say “if only I knew then what I know now…”

What are we doing to make transition more effective?

Transforming Transition!

A conference for students, parents, and teachers on Aug 3, 2019 @Denver University Campus

Register here:

Preview the Amazing Race

Transforming-Transition-Conference flyer.pdf

 

Filed Under: Uncategorized

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CO Families for Hands & Voices is dedicated to supporting families with children who are Deaf or Hard of Hearing without a bias around communication modes or methodology.  We’re a parent-driven, … Continue...

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